B12 Deficiency and Medical Procedures: Seeking Advice

Well, life is getting even more interesting!

I had to go see a gynecologist last Thursday. She booked me in for a hysteroscopy, curette, and to insert a Mirena on the 22nd of February. She'll remove fibroids, polyps, and a cyst from my ovaries, and remove a white mass in my uterus that looks terrifying. She says it's probably not cancer, but she will test it anyway.

The doctor says that she is not happy with my excess flooding at the time of the month. She's not happy!!!! I'm not exactly impressed with 8 days of floods, pain, and period pain bouncing off Tomi the colostomy, making him hurt like heck. Who would have thought you could get period pain in and around your stoma!!!!! I sure didn't. That was a very unpleasant surprise.

If we can control the bleeding, that will be good.

The doctor was not happy with my history and the kinds of pains and problems I have had over the years and plans on doing everything asap to get me feeling better and healing inside. My insides are just not pretty.

I have already had years of bleeding like periods out of my anus as my hemorrhoids and scarring get ripped by my attempts to poop, + the 8 days a month of flood and an iron deficiency that has contributed to my constipation and created a lovely cause and effect loop.

The doctor asked if I bleed outside of my periods..... um, I don't know.! I bled at least once a week prior to Tomi. I don't know exactly where it all came from. It just came and scared me to death. The doctor is going to examine everything and remove anything that looks like it will cause trouble or pain. Thank God for that. And even better, I will be unconscious for it all.

She booked me in for surgery on the 22nd of Feb - that was fast! Then sent me off to preadmissions to do the paperwork

The preadmissions nurse wanted me to have bloods taken before my operation, and I showed her a form my doctor had given me for detailed bloods. She sent me off to do that test as it was more detailed than the one the hospital gave me.

I got the results this morning

Increased cholesterol
Low iron (as usual) I have had low iron for years, and up until the constipation got too much for me to handle in Sept last year, I had been on iron tablets. But they cause constipation..... spinning in circles here! LOL - why do all of my health problems have fixes that give me constipation.... I've even got constipation with Tomi!

And my B12 came in as very low and so worrying my doctor has ordered a further blood test for me and told me to do it tomorrow. - an Active B12 test whatever that is.

I did a little reading up on B12 deficiency and to be honest, it scared the life out of me, and Tomi, because I had heaps of the symptoms - low blood pressure, dizziness, lightheadedness, hypothyroidism, low iron (consistently low for years actually), tingly legs, blotchiness in the legs on standing (bright red in summer, purplish blue in winter! I'm a colorful character I tell you - lol), difficulty swallowing, OMG I am freaked out.

I understand that it is possible to get B12 injections to boost my reserves, but I have the idea they inject into the spine. Is that right? Has anyone had B12 injections? Where did they stab you?????

I am soooo freaking out

And to add a bonus, I am expecting to be sent into the hospital in March for hemorrhoidectomies (please God do them fast! Zap me now for the pain is too much!!!), a colonoscopy, and a transit study. I can see me booking a nice room in the hospital and letting them just get on with it.

Perhaps that is best.

I am very worried about the B12 stuff though and would appreciate any advice or knowledge you may have.

Wow Jesus, you are freaking out... I was exhausted reading that one. I had low blood pressure, always at the hospital. "You know you have low blood pressure." Na, love, you tell me every time I'm here. For some up ya bum fun, heheheh. Ok, when my Crohn's was bad, I couldn't even get on the tram. Being from Melbourne, it was like bricks for feet. You must feel exhausted, darlz. Mine got down to 1, just about nothing. No injections for that worked. No constipation, Crohn's fixed that. Or when I had to have my chezza, she doesn't take those tabs. They end up in the pouch 1 hour after. So, I had to pay for infusion. Wicked, it was fantastic. With the B12 injections, a lot of alcoholics need them. My GP said I have had a few injections. They are in your arm, not your back, and not in the vein. Top of arm, no probs. Are you sure it's only B12? Coz that's simple... Where is the stoma? How does that get blood on it? Over it? In it? WTF is that? Gosh, you poor luv. And how do you poop out your bum and stoma? Confused, ma mate. Either way, really interested with all the dramas inside. Know someone who has the monthly prob bad, but doesn't have a stoma. She now gets pain. She joins my club now. Let me know, darl. Wowa, please let us know after Feb and good luck. REM B12 IN TOP OF ARM, unless something I haven't had before. So, that's all I know. Cheers. Hope you get better finally. Mare ;-mooza

Hi there - I have B12 injections every 3 months, it's just a little one into the top of the arm - stings a bit but that's all. Was very interested to read about the leg thing though - my legs (inner thighs starting above the knee) are now dark purple and have been for some time - GP just shrugs - I am beyond him now .....

I was interested to read of all those gynae problems you are having - as I think that's maybe where I will be heading next as my pain doesn't seem to be digestive related at the moment - it is deep, central and radiates into my lower back. I don't bleed like you do - sometimes am very heavy but then it will be light a fortnight later, then will miss for 6 weeks etc etc.

I have become constipated in my colon beyond my stoma and when I get this pain, it makes me want to 'go' but am struggling ... in the past my pains have been related to stool moving down my colon, but now it doesn't quite seem to be the case.

My last 2 blood tests have shown loads of inflammation 'somewhere' in my body?

Yours sounds like endometriosis which will be my next query too .... previous surgery from caesarians/laparotomy etc or may be just adhesions giving me hell - whatever, it is different now to what I was experiencing before.

Good luck for your surgery - it is on my birthday - nice to see they've got you in quickly ... take care
Rach xxxxx
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I have to give myself B-12 injections once a month. I too have excessively low blood pressure. The nurse has me walk for a minute or two so she can get some sort of a reading. I also have low iron and pretty much low everything else. Some days I do feel like I have huge bricks on my feet. Just going up the stairs to get into bed is a chore. You know once you get into bed and settled and comfy you have to go to the bathroom....lol

Thank you, thank you, thank you!
I feel so much better now. I was freaking out seriously! My mother used to work in a doctor's surgery in England in the 1980s. A lot of Pakistani and Indian ladies needed to have the B12 shots - pushed into their spine. So that freaked me out big time. I don't want needles in my spine.

Sorry I confused you, Mooza. Let's see if I can make it clearer.

I have had serious constipation since I was 7 years old. I can poop naturally only with my period - approximately once every 40 days. The period is affected by the constipation and bowel pressure too. However, up until November 2010 when I got the colostomy, I felt the need to go to the toilet almost constantly. When I went to push down, all that happened was that I bled from my anus. And I would bleed so much that it was like having a period from my anus. It was terrifying.

I have serious anal scarring because I was sexually abused by my father for 14 years beginning before I was one year old. Over 75% of what he did was anal abuse - either with his body parts or with objects. As a result, I have extreme damage inside me both in my anus and in my vagina. The anal damage has resulted in hemorrhoids, scarring, fissures, and this horrific constipation, and all that anal bleeding. When I tried to go to the toilet, the pushing puts pressure on all the scarring and damage, and I bleed badly.

I finally went for help last year and, well, the colorectal surgeon looked at my body, had a fit, and declared a colostomy my best option. Thus, Tomi was born. Since the arrival of Tomi, I have had some anal bleeding when I have to do those horrific mucus poops. No one told me about those gems!!!! Blerch!

I was referred to a gynecologist as well, and she's had her fit and decided to operate to remove the damage my dad inflicted inside my vagina. After all, it's not normal to be made pregnant by your father 3 times between the ages of 8 and 10, and a child's body is not meant to have to deal with that, and it sure isn't designed to actually have to give birth at age 10.

There is a lot of damage, and I am dealing with the consequences now.

Since Tomi, I have lost a lot of the chronic pain I was enduring. And I have lost about 2 dress sizes in bloat. I don't feel as bad as I did, but I still feel pretty gross.
So the bleeding is from my bottom, not around the stoma, and it has reduced a lot since November 2010.

My periods are horrible. Flood one month, famine the next. But the famine months hurt like hell. Interestingly, since I have had Tomi, when I get period pain, I feel it start as pressure around Tomi and then the cramps begin. It's like they bounce off Tomi and build up and up until I am forced to take a pain pill. They are not nice at all. That's one of the reasons the doctor wants to operate. She said it's hard enough having a stoma without period pain bouncing on him for 8 days a month! I totally agree!

The doctors are testing me for pernicious anemia (I didn't even know that pernicious was a word!!!!! I'd only heard it in the original Willy Wonka movie and couldn't believe it when I heard it said! It made me laugh. but the disease is no laughing matter!) and I went and gave blood to the vampires this morning. Will hear back in a couple of days if I have a problem. But it's terrifying at the moment.

I have such admiration for people who can inject themselves with medication. I am totally freaked out by that. Very scary for me.

I am finding it all overwhelming right now. What with the huge array of spots on my parastomal skin, the dreadful heat and muggy weather, and not having the energy to do anything, my life is a little frustrating and overwhelming at the moment. And if you ask for help, it's even more exhausting because they come evaluate you, taking hours and hours to do it, then give you a list of people to call. I thought they were supposed to be helping! They've just given me hours of work to do on the phones, and I don't have the energy.

But gotta look on the bright side. I am finally getting help, I am getting fixed up, and I am in far less pain than I was


I'm alive! Gotta be happy with that!
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I don't have time or the patience to make doctors' appointments and sit there waiting for 30-40 minutes for a 2-second deal, so I just give myself the shots. Same with my Humira, I do those too. If I had another hand, I could probably give myself an IV line.

About your period pains in your stomach area, I get those as well even when I ovulate. You also might still have a fistula in your anus area. I did even after having a permanent ostomy put in after three failed J-pouches. I've had four surgeries since to correct that issue. You should not have any blood or discharge coming from your asshole. They had to remove mine this last surgery in May 2010. They took my inner thigh muscle out and created a "flap" which "plugged the hole" and hopefully will keep the drainage from happening.

Also, it sounds like you might have something else wrong with your uterus and colon. My girlfriend has endometriosis and she would actually bleed from her anus when she was on her period. Her uterus would make other organs that are near it think that it is part of the uterus during the time of the month. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001913 You might want to look at more literature to confirm and have your doctor test you if they haven't already.

As for the B12 shots, there are liquid gel capsules you can take daily that absorb easier for ostomy patients. You can also do a shot once a month if the pills are not available.

As for the iron, there are also pills you can take that are capsules and they release easily. If you have problems with constipation, you need to work on the fiber in your diet. I had chronic constipation which made it hard to diagnose me with UC. You could also consider changing your diet to include more foods that have high iron in them like meats and eat more fibrous fruits that have been mashed so that they don't cause blockage.

My best suggestion is to find an overall diet that can help you absorb the nutrients that you are lacking and improve them to help your body fight infection and hopefully heal better.

I feel your pain...13 surgeries in five years and I'm still not fixed *sigh*

Hi guys

Thanks for all the support and care - it has helped.
Well, I went to the doctor today to get my results and got lots of news. So heaps to tell you all.

Firstly - the B12 issue.
My doctor is really mad that she scared me about the pernicious anemia. She wanted to rule it out because I had a very strange B12 reading. She redid the first test, did a follow-up exclusion test, and the results came back okay. She says that it seems that there was some sort of issue with the first test because the tests 3 days later were the low end of normal but still normal. So thank God. No pernicious anemia. She tells me that I have to monitor my B12 and folate over the next few months to see if I have a repeat of this anomalous reading because that could be a warning of a problem, but leave it to her to worry about. So we are doing that.
I am so relieved that it came back okay. Trust my body to be hinkey. LOL

The doctor was really worried because the original test came back so low. She said that it was an outrageously low number compared to my normal levels that it freaked her out and made her think things were going bad really quickly.

So no pernicious anemia for me
Secondly - I do have a vitamin D deficiency, and she has put me on a supplement for that. This has to be taken with food, so it will give me an opportunity to ensure I have breakfast because I will need it for the pill I have to take.
Apparently, vitamin D deficiencies are the new flavor of the month out here in Oz because we are all not getting enough sun. Look ma, we got the next fashionable illness..... LOL (Kidding! Just kidding) Unfortunately, I am not in a position where I can sunbathe and increase my exposure to the sun, it causes too many other issues for me. But I will be increasing my vitamin D with the supplement, and my nutritionist will help me make sure I eat foods that will help too.

Thirdly... oh boy

Iron deficiency. I have a significant iron deficiency, but it is much less than it was when I had the massive rectal bleeding I have had over the past 2 years (while they have been monitoring it) I am not currently taking iron tablets because of the impact on my bowels, and yet, the iron deficiency has not gotten worse than the last time they took bloods. Last time I was taking slow-release iron tablets. So there has been an improvement. When I have the operation on the 22nd of February and the doctor fits the Mirena thing that should have a dramatic impact on my blood loss and help my body to build up its iron stores. So that's good. My doctor said she would monitor my condition for now and try to avoid the iron tablets so we can reduce the chance of Tomi clogging up and getting constipated.

And fourthly.... this visit was full of groovy news!

I told my doctor that when I get up and move about I get hit with lightheadedness and a sort of dizziness that immobilizes me for a moment or two and is quite distressing. I also commented that I have no energy and walking up stairs leaves me breathless. She took my blood pressure both sitting and standing and took my pulse rate. Hmmmmmm she says. She goes to the computer and checks something and says, what concerns me is that your pulse rate has gone from 60 beats per minute in 2008 to around 120 beats per minute this year. She says it's been steadily rising and is consistently high. Yep, that's what it was while I was in the hospital says
114 - 117 bpm.

So the doctor says she wants to order a test where I have to wear a harness thing for 24 hours to monitor my heart rate constantly. She says that it could take a while to arrange, but then she decides to write to my colorectal surgeon and ask her to organize it and a full cardiac workup while I am in the hospital for the transit study or earlier if possible

She says she is looking for abnormal rhythms, missed beats, and times when my heart does strange things. Part of the test is to write a diary of symptoms over the day and to see if there are strange things going on when I stand up or try to move around. Okay

She also ordered a chest x-ray which I will get done this week
The doctor then asked me the billion-dollar question. This is the question I just don't want to answer. ... Do I have any epileptic episodes? Or epileptic-like events going on....
um um um but I like having a driver's license. If I answer this question, will they take away my license???
Anyway, I hesitate and then think if I can't trust my GP, who can I trust. So I say yes. I've had no grand mal tonic/clonic seizures. Not for 15 years. If I'd had them, I would have gone straight to the doctor because they are dangerous. But I have had the petit mal absences, the pre-epileptic auras, the start of the tonic/clonic epileptic seizure (and stopped it in its tracks), and some of these weird long staring fits where I get frozen staring at the wall or dots on the wall. So I guess that's a resounding YES.
I told her I don't want to lose my driver's license, but also stated I haven't driven since these things started up again. I'm not a total fool.

I also told her that they started again approximately January 2010 when I began to write the police statement. I have always had epilepsy, and originally I believed that these were flashbacks of past events. However, I was having the pre-epileptic spinal twist aura and that concerned me. I have also found myself needing to get very cold very quickly - put my face on the cold floor, etc a few times which is also an epileptic indicator

So lots of epileptic stuff happening. My doctor has requested a full neurological workup to be done as well. She told me that I was a long way off having my license taken away and that she wouldn't take it away unless I was having uncontrollable seizures. She said the worst that would happen is that I have to go back on to epilepsy medications. But as I haven't had a full and complete seizure of any variety for over 15 years, she wasn't too worried that it would get to that.

Thankfully I developed a lot of strategies when I was epileptic before, and I have been able to activate those as and when necessary and thus have not developed past the aura and spinal twist stage in the grand mal seizure episodes and not had any identifiable petit mal seizures. But I will be on the lookout. The doctor wants to check the electrical functioning of my heart and my brain just to be sure things are going okay, and I am okay with that.

So lots to think about and lots to look out for. Very scary, but I know the doctor can sort it all out and find out what is going on.
I'll leave them to get on with it.

You can have iron administered intravenously. I couldn't tolerate the tablets; they made me vomit. However, I had no problems with the intravenous method. It was just a pain going to the hospital once a month and sitting for an hour.

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